Saturday, February 13, 2010

CCSVI, Already a Success...

This month, CCSVI exploded onto the MS radar screen, as the Canadian news media picked up on the story and the University at Buffalo released positive results from the preliminary stage of its ongoing imaging study (click here for more info). While the news that Multiple Sclerosis may in fact be of vascular origin has the potential to fundamentally change our understanding of the disease, the CCSVI story contains other vital lessons and implications for patients, researchers, and doctors alike.

Only 10 months ago, the buzz about CCSVI was barely a murmur. The research of Dr. Paolo Zamboni, founder of the CCSVI theory, was largely unknown, and the concept that MS might be a vascular disease would have been given short shrift by the vast majority of MS researchers and physicians. Remarkably, due to the efforts of a very small group of activist patients, led by the wife of an MS sufferer in California, that quiet murmur has grown into a tremendous roar, and rather than scoffing, even the most skeptical physicians are now being forced to take notice.

The uphill battle to get CCSVI serious attention was truly a grassroots effort, spurred on by patients and their loved ones desperate to find answers that mainstream medicine has been unable to provide. The story of CCSVI is one not only of scientific innovation and medical insight, but also that of the growing discontent that the MS community feels for the current state of MS treatments and therapies. To put it bluntly, the MS the status quo just ain't cutting it.

Upon diagnosis, MS patients are usually advised to go on the first-line MS drugs, the injectable interferons. These drugs leave many of those taking them feeling quite sick after every dose, and clinical trials have shown that they are only effective in about one third of the patients using them. Second line drugs, such as Novantrone and Cytoxan, are immunosuppressive chemotherapy agents known to be toxic, and have potentially fatal side effects. The newer drugs, such as Tysabri, show much greater treatment efficacy than the older drugs, but they too are immunosuppressive, and carry with them the potential for fatal complications, the risks of which appear to increase with the length of time patients continue treatment.

To my mind, despite problematic side effects, the greatest problem with these medications is that they all treat MS by suppressing or modulating the immune system. The fact is that an immune system gone awry is a symptom of MS, a disease whose origin remains unknown. I've used the following analogy before, and it is admittedly crude, but treating MS by suppressing the immune system is like treating a broken leg with painkillers. The symptoms are superficially addressed, but the root cause of those symptoms is ignored entirely. Yes, the current MS drugs can improve a patient's quality of life, and may slow down progression of the disease, but they do nothing whatsoever to address the still unknown underlying mechanism that drives the disease.

The palpable excitement about CCSVI in the patient population speaks volumes to the incredible frustration patients instinctively feel about the current state of MS care, and the desperate need for hope among MS patients. The Internet MS chat rooms and bulletin boards are overflowing with patients that are sick of being sick, and who feel trapped by a medical establishment that seems unable to address their fears and concerns, much less the debilitating illness they are forced to live with every day. They see pharmaceutical companies earning billions of dollars yearly marketing drugs that seem designed more for profit potential than for disease eradication, and doctors whose hands are tied as much by medical dogma as by the lack of treatment options available to them.

The rise of CCSVI should serve as a model of patient self advocacy, and illustrates the absolute necessity that patients educate themselves to the best of their abilities, and use the knowledge gained to intelligently question at a fundamental level the how's and why's of their treatment choices. Without the efforts of a few incredibly diligent and steadfast individuals, the CCSVI theory would still be languishing in the back pages of a few medical journals, and a theory with the possible potential to significantly alter the perception of MS could very well never have seen the light of day.

CCSVI may prove to be the Rosetta Stone of MS, or it could turn out to be just a curious piece in the MS puzzle. Regardless of the eventual outcome, the brave efforts of a handful of advocates have managed to shake up mainstream medicine, and have opened the eyes of researchers to concepts that had been either entirely neglected or never even previously examined.

A tremendous amount of research will now commence attempting to prove or disprove the CCSVI theory, and along the way many important discoveries, some having nothing to do with CCSVI, will undoubtedly be made. Monoliths such as the national MS societies and large-scale research organizations have been forced into action, all due to the hue and cry of a patient population brimming with righteous consternation.

As a community, those affected by MS must keep the momentum building, and actively take part in efforts to spark the flames of discovery. If you have the means, donate to organizations researching and advocating alternative MS treatment options. If you have the time and physical ability, volunteer to help further those efforts. At the very least, speak up to the powers that be and let your voice be heard.

As patients, we must be the straw that stirs the drink. As unfair as it may seem, the burden of forcing the action ultimately falls upon the shoulders of those that will benefit the most from that action. By simply shining a light on the path towards empowering the MS patient population, CCSVI is already a stunning success.

27 comments:

Marc, you are right...again. There have been a few grass roots MS initiatives- Low Dose Naltrexone comes to mind. However, the CCSVI effort raises the bar. This is happening at the same time Big Pharma has hit a new low by introducing a drug, Ampyra, at over $1000 per month, when we've been able to get it's generic for about $30 per month up to this point.

Great points, Marc! Love your blog! I think its great that thousands of MS patients are mobilizing funds from donations from themselves and from friends to move CCSVI research forward. We MS sufferers need to become more vocal like our fellow suffering friends who have AIDS or Breast Cancer do. The GOLDEN AGE of science, understanding, and new medical therapies should start TODAY!!!!!

DH (a Non-MSer) and I did something we seldom do. I made him vote on his work computer for Marc's blog (yah Marc, go Marc!!!) and he heard about CVCSVI for first time, remarking US news never talked about it, so it must be another MS flash in the pan. I said I wasn't paranoid or a conpiracy believer but wasn't it odd that..... Oh no he said, the media wouldn't do that but conceded Networks might. We ended in a deadlock. I hope something comes of this. My kids are going off to college soon, with only one ard I'll never be trusted to babysit alone one day.....kicker

Marc, your site has become my one stop shop for my daily MS updates! The only other daily research is following the news of what the pharmas are rushing to implement (..."New Diagnostic Criteria for MS Published", Medscape Medical News, 2010-02-12, etc). Instead of forwarding my daily research to my medical community in Minnesota, I sent them your link! Any suggestions of where to send a donations?

Your research, writings, and photos have given me energy and new hope for a very different future than I had imagined. Thank you.

Thanks Marc - great coverage as always. However, I remain a teensy bit cynical. In November, our local MS Society was mobbed by people demanding that they be allowed to have stem cell treatment, people were flying all over the globe for it, people started blogs about their amazing recoveries. Nary a month later the frenzy started for CCSVI. I agree with the need for MSers to be educated and to advocate for their treatment (god knows no one else is as good at it as we are), but we aren't going to get a push button cure for this disease and we need to stop acting like birds chasing the next shiny thing if we are to be taken seriously. There is hope both in the stem cell approach and the CCSVI approach - both need way more study. I'm still curious about the male/female differences in MS, the differences in incidence by latitude, etc. I feel there is more to this than one thing. That said, I'm encouraged there is another line of research opening up.and I hasten to say I like birds...

Here in Norway, I am trying my best to get my/our voices heard about CCSVI. This past week, I sent (what I hoped was) a convincing appeal to the national public broadcasting network, NRK as to why they should cover this very important potential breakthrough. NRK is a public-sponsored, highly credible news source in Norway and I believe that their coverage of CCSVI would go a long way to getting notice from both patients and the health sector.

Up to now, a few neurologists here have reacted to the concept of CCSVI with extremely cautious optimism, while at the same time trying to poke holes in Dr. Zamboni’s research methods. The medical community is saying that they currently have no intention of doing further research on CCSVI or to offer testing for ms patients. Of course they are strongly advising us to have patience and not travel to Poland for treatment.

The good news is that I managed to get my appeal to the right contact at NRK who promised to send the information to the staff at the NRK TV program “Puls” (a weekly health magazine). Yesterday, I was called by one of the Puls reporters to get additional information. Where the story goes from here is anyone’s guess, but it looks quite positive.

Marc, your posts are awesome!. As are the photos. Thank You for using your estimable talents to help us MSers.

@Ann, Your comment serves as a model for others. CCSVI will rise or fail on its own merits, but there is enough there already to merit accelerated-large-scale clinical trials. Pushing the good news is a great way for patients to be active in the process.

@mad sow, I believe stem cell research will likely be an important aid in healing our old lesions. We're just not quite there yet. Again, the way forward is participation in blinded clinical trials. And responding to real results like the Buffalo study. Charlatans will always be out there to take advantage, so beware, learn all you can and make your choice when and where to jump.

I bet we'll see a lot of centers open up to treat CCSVI. The best ones will do peer reviewed clinical trials. For patients whose lives are crumbling because of MS, they will make the calculus, as they are entitled to do, that finding a qualified interventional radiologist willing to treat them ASAP is the right thing for them. I wish them the best and will be right behind them, after we learn a bit more about the best protocols from the clinical trials.cope and hope.

First step, find the cause of the disease. Second step, repair the damage. The Myelin Repair Foundation is where my money would go.www.myelinrepair.orgThese people are fantastic and you can subscribe to their newsletter that is chalk full of information. (I have no personal affiliation, I've just found them helpful.)

Help, I really want to volunteer my talents and time (as limited as it is) to the CCSVI movement but don't know how to do it, and I'm not gonna call to the MS Society as I have done in the past!Oh, P.S. AWESOME BLOG!!!

There are two camps. Those of us who suffer or care for someone who suffers with MS and those that do not suffer from MS but live off our suffering by selling us treatment, medicines, advocacy etc. Let me rephrase their message about CCSVI and the Liberation treatment " we demand and insist that you continue to live in misery, continue to wear diapers, see double and continue to be a burden on others until we decide that it is now safe and allowable for you to try the Liberation treatment. Shut up and get back in your wheelchair!". None of them look upon themselves as professional leeches but they know that their professional future and all the drug company provided freebies are in serious jeopardy. What will happen to this army of professional caregivers if 50% of MS patients return to normal life? Once we understand the political dynamics it is easier to understand the their laud and shrill logic behind "caution, more studies, proof, placebo effect" etc. A simple angioplasty type treatment to restore normal blood flow has little or no down side. Why should even healthy people walk around with blocked veins? While it is important to learn why and how the Liberation treatment works, the more important thing is to provide relief NOW for those whose life is a misery. Delay is immoral, inhumane, self serving and runs against all human decency. We need to unite and face down the MS establishment. No self respecting American should put of with this nonsense. Let me know if you are with me. simonyigindele@yahoo.com

I was just ranting today to DH about how we are treated like the red-headed stepchildren of even the disease world. The drastic differences in numbers from the various early studies has certainly put me in "wait and see" mode - where I think we should all be until some solid research results come out. Easier said than done in a disease where time is a sworn enemy, though.

As Always Marc, You have a flair for writing and a way with words.Yes of course, I will post this to my blog and Yes, I will ask you to have all your faithful readers, register at my website so they can get the weekly benefits of my ms e-newsletter that you receive each Thursday.

Yes, WE ARE GLOBAL. From ANYWHERE in the World - If, You are affected By Multiple Sclerosis as either the patient, a caregiver or a friend, and want to remain up to date with ms information, then please register at this website: http://www.msviewsandnews.org - to receive our weekly MS related, e-Newsletter. - thank you

I look at facebook ccsvi ms and also the website thisisms.com and your blog etc. When I read through the posts tears come to my eyes and I am filled with grief. I have had MS since 2004. I lost the use of my hands and had to sell my business. Since then even when I thought things were going well, MS was quietly attacking my brain and spine with new lesions. Most days I feel like I have no control over my life. I am afraid to plan a vacation because I never know if my body will cooperate. I know many have MS much worse than myself and that is why I completly understand the urgency to do something. Everyday we wait is a day where damage can be done to our brain and spine. If our doc's thought we were having a stroke they would take action to avoid permanent damage. Yet no action can be taken for an MS patient until studies can be done to see if angioplasty is safe? Seems to me that the people who are stable are okay with waiting for blinded studies etc. Those of us who are desperate (and that is what it comes down to)to hold onto our lives and our independence cannot afford to wait. Where has human compassion gone?

The Myelin Repair Foundation is where I donate! The CEO and founder has MS and is passionate about a cure. I'm excited about CCSVI and anything that can repair the damage w/out harmful side effects. Praying that ethics overpower financial interests.

To be fair, regarding your comments on "if we were having a stroke," angioplasty and/or stenting for critical carotid artery stenosis - which is what you are referring to - had to go through the same studies and trials.

In the early days of stroke prevention, a large number of extremely unfortunate patients suffered from additional strokes far more severe than their original (usually minor) stroke, simply due to inexperience and poor technique. It took a *long* time before stents and angioplasty were safe medical procedures, and not just as likely to kill you as leaving things alone.

As a disclaimer, I'm a vascular sonographer (in the stroke unit) at a public hospital.

Just want to thank everybody for their intelligent, well-thought-out posts. I'd love to reply to each of you individually, but that might take all day, so I'll try to touch on a few points.

For those of you looking for places to donate, I recommend, as others have, the Myelin Repair Foundation, as well as the Accelerated Cure Project. If you're looking for ways to volunteer your time to the CCSVI cause, you might want to contact the BNAC at http://msterypartyccsvi.bnac.net/, as the folks who are running the Buffalo study need people to organize local fund-raising parties so that the research can continue.

I share the sense of frustration that many of you have expressed, but it's important to keep in mind that CCSVI is still unproven, and as the Buffalo study showed, it likely plays a large role in the MS picture, but is not the magic bullet for all patients.

Also, remember that all of the procedures being used to treat CCSVI are currently experimental, and not without risk. Believe me, I understand that doing nothing is also not without risk, but it's important to enter largely unknown territory with eyes wide open.

I believe CCSVI is a big step forward, not only for patients, but hopefully also for researchers, who perhaps now the widen their field of view and look beyond autoimmunity.

marc, i love the way you framed CCSVI as already a success, and the reasons why. right on. you are also absolutely right about the current available drugs and where they fall short - i think many people don't realize the immune suppressant aspect, which is a primary reason why one should think twice about taking them (and of course the poor efficacy rates). great post, thank you!

I am a self-respecting American who is married to an Italian and has lived in Italy for 30 years. The whole CCSVI thing is shameful as both drug companies (ALL of them) and neurologists (95% of them) won't even admit that it MAY be a real hope in at least blocking MS. They are too panicked that their meal ticket (we, who suffer from MS) may be reduced. Vaffanculo !!!

Scott Johnson phoned me and I suggested he get an MRV and I would pay for it. He refused. I am trying to get Domincan Hospital in Santa Cruz to set up a CCSVI facility and I have offered them $25,000 if they would connect with Stanford and perhaps get Michael Dake or a trainee with him to come to Santa Cruz maybe once a week to do it here so my wife doesn't have to be driven to Stanford where she is in the program there. Scott Johnson, you are closer to STanford than I am, and how about helping me set a program up at Dominican, then after the cause is eliminated, we can fix the myelin. I will then contribute to your foundation. Will you please print this and let's get some move on. I'm in the Santa Cruz phone book if anyone wants to call me. I believe the resistance to the this procedure is a form of mal-practice. Who wouldn't want to get occluded arteries opened. On the national forum a couple of days ago the interventional radiologist said the procedure was straighforward and simple. Please, Mr. Johnson, join me in getting this to a local institution so people don't have to go to Toyota to get this procedure. Very truly yours, Louis Bartfield

I am wanting to know where this procedure is being performed. I have emailed all over and have not heard back. I would like to pay for this treatment and I can't seem to find anyone that is performing it. Can anyone out there help with locations and or emailsThanks

I have put my name on many lists all over the world. I am waiting for feedback, I would do anything to speed the process up. Whether it worksor not I think its worth a shot and I have nothing to lose.Does anyone out there know a place preferably in the U.S where the procedure is being done with a reasonable wait time.

I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical travel package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can’t recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid- November and I am so very thankful to everyone at CCSVI Clinic for making this happen!

Sign up to Receive New Posts by E-Mail

E-Mail Me

Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...